14-year-old boy is losing his sight but sees a community there to help

Brenden Sorensen, 14, who has been diagnosed with Usher Syndrome and is expected to lose his vision, talks with attendees at a fundraiser for him in Midvale on Saturday, March 8, 2014.

Ray Boone, KSL-TV

Summary

Brenden Sorensen, 14, has been diagnosed with Usher Syndrome and doctors say he will lose his vision. His father and stepmother are raising money so that he can see the more of the world while he still can.

“What's frustrating about it is there's nothing you can do about it. You get bad news like that and usually your reaction is, 'What are we going to do to fix this?' and there isn't anything except accept it.”

Kipp Sorensen, father

MIDVALE — When Brenden Sorensen was diagnosed with Usher Syndrome and learned he would likely lose his sight, he asked whether he would be able to drive.

His father, Kipp Sorensen, and stepmother, Aja Kayser, both recall telling him that, no, he will never drive. Both also marveled at his response: "OK, then I'll take the bus."

"We were like, 'Really?' It was very emotional for us," Kayser said. "I think all of us involved were crying and feeling so sad for him and he kind of decided: 'I'm going to make this work.'"

Brenden, 14, was diagnosed with the disease eight months ago. Kayser said they have been told that every case is different, but that Brenden will likely lose his vision within the next year.

One doctor gave him a little more time, another to the end of the summer.

"Every case is completely different and we're hopeful that he doesn't lose it all and ends up with tunnel vision or something — something besides completely blind," Kayser said. "But we don't know so we're like, we got to do what we can do now."

The family put together an event Saturday at the Hawaiian Cultural Center in Midvale to raise money for trips to the places Brenden would like to see around the world. A dinner featuring foods from the various nations was provided and included Greek, Italian and Chinese fare.

Kipp Sorensen said the diagnosis left him feeling helpless, especially given the uncertainty with the timing and severity of what Brenden will experience with the disease.

"What's frustrating about it is there's nothing you can do about it," Sorensen said. "You get bad news like that and usually your reaction is, 'What are we going to do to fix this?' and there isn't anything except accept it."

He said Brenden is learning Braille and how to use a cane. There are plans for Brenden, who lives in Arizona with his mother, to attend a camp for the deaf and blind there, as he is also hearing impaired. But Kayser and Sorensen felt strongly that it was important for Brenden to see more of the world while he could.

He went to Japan and Thailand with his father and the Caribbean with his mother last year. Kayser said they helped him pick other potential places based on his interests.

"It really kind of stemmed from my husband and I because we've been lucky, we've been able to travel a lot and we've seen all these beautiful marvelous things and people and places you know nature and architecture and we thought we don't want him to miss out on that," she said.

"It's too incredible of a thing." She said they hope to do humanitarian work in Africa and that traveling will change Brenden's perspective to see that there are all kinds of people out there with their own challenges. Still, Sorensen said he is amazed by how well his son has handled everything.

"He's always about thinking how am I going to deal with this, then he accepts it and is like, 'OK,'" Sorensen said. "His personality is that way His personality is just — he's a saint. Always honest, always truthful, always kind, kind-hearted. He doesn't complain, just a way sweet kid."

Ernesto Lorusso, owner of Terra Mia in Orem, said he knows Brenden and Kayser and wanted to take part once he heard about Brenden's diagnosis. He said they try to often participate in community fundraisers, but that this was a little different.

"This for some reason really hit home," he said. "It's a young kid and what he has to face it's just unbelievable to me." He said he is glad Brenden wants to see Italy. Lorusso said it's a country of warm people and fantastic food.

"Brenden is going to be experiencing Italy with all his senses, the smells, the colors, everything is different," Lorusso said. "Life is a gift and it has to be considered such. The fact that he's going to lose one of his senses doesn't have to impede him from enjoying life to its fullest, so I hope he will learn that."

No matter how much money is raised or how much of the world he sees, Sorensen said the event Saturday was valuable.

"Initially, our intent was really to raise money for travel. My hope, actually, tonight is that Brenden just really comprehends how much people love him and how much people are here to support him," Sorensen said.

"In the grand scheme of things, knowing that is more valuable than going on any trip and we hope by the end of the night that he really comprehends how much he is really loved."

Popular Comments

"What's frustrating about it is there's nothing you can do about
it," Sorensen said. "You get bad news like that and usually your
reaction is, 'What are we going to do to fix this?' and there
isn't anything except
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7:43 a.m. March 9, 2014

Top comment

DEW Cougars

Sandy, UT

To Brenden Sorensen and parents

I have Usher Syndrome type II. I am
in the 50's and can still see and hear a little bit. Over time I continue
to lose my visual field little bit a time. I was diagnosed with this condition
at your age
More..

9:30 a.m. March 10, 2014

Top comment

im4kids

AUSTIN, TX

I have a lot of connections to the Deaf and DeafBlind community in Austin, but
no longer in Salt Lake/Midvale. There are strong communities all over (Arizona,
Utah, etc.) Please find this community and immerse yourself in their positive
outlook -
More..

Emiley Morgan is a legal affairs reporter for the Deseret News. She worked in the Features department before joining the News Division in 2009. Before her time at the Deseret News, she worked as a reporter and editor for more ..